The Pelvic Messenger Podcast

I have discovered a podcast called The Pelvic Messenger, here is the description from their page.

“Pelvic messenger, supported by the International Pelvic Pain Society and Beyond Basics Physical Therapy, is devoted to promote diagnoses, recovery, and success in treating Chronic Pelvic Pain (CPP) conditions in men, women and children. Furthermore, we are dedicated to improving patient and healthcare providers education on CPP. The founder, Elisabeth Oas, along with the managers, Amy Stein, DPT and Alexandra Milspaw, PhD want to accomplish this mission by discussing up to date topics and research on pelvic and sexual pain and dysfunction. Hosts: Alexandra Milspaw, PhD, Amy Stein, DPT, Michelle Waterstreet and Stephanie Stamas, DPT. Mission Statement: To provide educational talk radio shows on various chronic pelvic pain topics. In addition, we seek to provide hope and healing to individuals who suffer from pain related symptoms. We will be having shows on all the many diseases and syndromes, which can make up CPP. The show is a message of hope and healing. Stay posted to the International Pelvic Pain Society and Beyond Basics Physical Therapy blogs for bi-monthly guests and topics. We look forward to your calls and questions! “

I recently listened to episode about IC/PBS and I was amazed to listen to a Urogyn who understood it so well. http://www.blogtalkradio.com/pelvicmessenger/2015/10/21/painful-bladder-syndrome-ic--what-it-is-and-how-to-treat-it

My only complaint is that I have not been able to find this podcast of Castbox and their website is not very user friendly. However the content of these podcasts make it well worth your while to slog through it. If we can understand our conditions and how they work, we can do better on our journey with these conditions. Listening to podcasts is a fantastic way to learn!

I am planning on listening to their entire catalog so that I can learn and understand all the conditions in the pelvic better.

Why you need Yoga if you have Pelvic Pain

There are many reasons for pelvic pain; Endometriosis, Interstitial Cystitis/Painful Bladder Syndrome, Polycystic Ovarian Disease, Vulvodynia, fibroids, Pelvic Inflammatory Disease.

Having pelvic pain is stressful, it affects all parts of your life. Your work, play, sex life, sleep, ability to defecate or urinate. Often the treatments for pelvic pain leaves much to be desired, and many treatments are just a shot in the dark. Often we are treated, not as whole humans, but just as body parts. This is a toxic practice and we need treatment for our whole selves. Often most people with pain hear the same old line “you need to deal with your stress better.” I find this absolutely infuriating! I want to scream “I don’t live in a bubble!” every single time these words are spoken to me.

The irony is that the doctors are correct, we do need to learn with stress better. There isn’t a Stress Switch we can turn off and on. Having a medical professional telling a patient to do so is woefully inadequate.

One of the common under treated issues in the pelvis is Non-Relaxing Pelvic Floor aka Levator Ani syndrome, aka Pelvic floor Dysfunction. This is when the muscles of the pelvic floor are hyper-toned, or too tight. When these muscles are too tight they can cause pain, burning, and referral pain. When this is happening, the muscles are constantly in flex mode without an opportunity to relax.

The pelvic floor is a sling of muscles that support the pelvic organs. It goes from the coccyx to the pubic bone and from hip to hip. The Vagina, urethra and rectum are surrounded by these muscles.

The core muscles engage when we enter into our flight/fright/freeze state and the pelvic floor is part of our core recruitment process, This is a very important point to learn-when we are stressed the pelvic floor engages AUTOMATICALLY. It is part of our bodies process to keep us safe and secure, which is necessary for survival.

Now our brains are pretty smart…..but not THAT smart. They cannot tell the difference between a real and a perceived threat. This means that all the negative thoughts and stresses running around our brains can lead to pelvic floor engagement. This is why we need to learn to deal with stress. To help break this stress-pain-disease negative loop. Please take a minute to let that sink in. We create stress in our daily lives that our body automatically responds to, whether we want it to or not.

The pelvic floor is intrinsically linked to stress tension in our body; just like a neck and shoulder tightness from stress. There is also a link between clenching the jaw and holding the muscles of the pelvic floor.

  This is a very simplified graphic that I made to demonstrate the pain loop. *demonstrating my ballin graphic skills :)

This is a very simplified graphic that I made to demonstrate the pain loop. *demonstrating my ballin graphic skills :)

So why yoga? How can one activity help your body in so many different ways?

Yoga has a unique position to be able to help you bring balance to your body, mind and spirit. Since pelvic floor dysfunction is connected to all 3 integral parts of us, we need to treat our entire selves. We need more than just medication and doctors visits.

We need yogic relaxation to help us release the tight muscles and to bring our bodies into the rest and healing state. We need yogic philosophy and meditation to learn how to deal with the variety of stress in our daily lives as well as how to treat ourselves with care and compassion. Pranayama (breathing) can help us get out of the stress state. Combining pranayama and asana (movement), we can teach our pelvic floor to engage and release properly. By learning to express our true selves we can be at peace and bliss.

Yoga is an amazing tool to help us break the pain cycle. It is not going to cure you of your disease, but it can make a dramatic impact on your quality of life. The variety of yoga practices helps the different pains our body goes through. Every day is different for our bodies and there is a yoga practice that can help each day.

  Another sweet graphic representing how yoga could be used to break the cycle of pain.There are many different practices in Yoga. The key is to keep experimenting and finding the one that speaks to you.

Another sweet graphic representing how yoga could be used to break the cycle of pain.There are many different practices in Yoga. The key is to keep experimenting and finding the one that speaks to you.

If you like what you see here please come find me on FB! Helena Spears Yoga, or follow through the links on the bottom of the page. I also have a fb group called “Yoga for people with pelvic pain” this group is linked to my FB page. You could also go to the contact page and book in a free 15 minute call with me to see how I can help you start your Yoga journey

Acceptance is life changing

acceptance

[ak-sep-tuh ns]

noun

  1. the act of taking or receiving something offered.

  2. favorable reception; approval; favor.

  3. the act of assenting or believing:

I am OBSESSED with acceptance; it has been completely transforming for me.

This acceptance journey started when one day I just thought to myself: I am so darn tired of fighting against all the negative things in my life. I am tired of fighting against myself, body, my mind, and my feelings. I am so tired of the NO; I am going to just radically accept every single moment as it comes.

Acceptance has helped me to live in the moment with ease. Now I am not living in the future, with an attitude of dread, fear or negativity. When something negative happens to me I say “Yes, this is happening” which gives me the opportunity to pause and analyze what is happening in my life. Then I can take an action to rectify the problem, instead of reacting out of a place of negativity.

denial

[dih-nahy-uhl]

noun

  1. an assertion that something said, believed, alleged, etc., is false: Despite his denials, we knew he had taken the purse. The politician issued a denial of his opponent's charges.

  2. refusal to believe a doctrine, theory, or the like.

  3. disbelief in the existence or reality of a thing.

Dr Gabor Mate has a quote from his book “When the Body Says No” it goes like this: Never doubt the toxic power of denial and positive thinking.

Often when I am in pain the first thought that crosses my mind is NO. Fear and dread fills me, my body tenses and the negative pain cycle is perpetuated.

I had been stuck in this zone of suppressing my true self, my symptoms and issues while using positive thinking to try and make myself feel better. Thoughts like “Hey, this isn’t so bad, I can handle this! I just gotta keep going!” Then I would over do it and push myself way over my limits. I did this over and over on a never ending negative loop.

Saying “YES” to our experience is a powerful way to move through life. It wasn’t until I went to a pain clinic and had a very thorough assessment of all my treatments that I accepted my IC/PBS. It was like a weight was lifted off me, I had done everything possible to help myself. I didn’t need to fight any more. I could give up my search and destroy mission, and go back to enjoying life and exploring other things.

The truth is that I haven’t given up trying to help myself, but my efforts are within the constructs of Abhyasa and Vairagya. I have also had much healing occur after I came to acceptance. It isn’t about giving up, it’s about saying YES instead of NO.

There is an art to acceptance and it helps to have a guide. A friend told me about a book called “Radical Acceptance embracing your life with the heart of a Buddha” By Tara Brach

This book is very highly regarded and is widely available. Tara Brach is also very prolific and has many wonderful resources available. https://www.tarabrach.com/

Dedicated Practice and Non Attachment for IC/PBS

"Here are two necessary components to reunite us with our True-Self. Imagine that Abhyasa (devoted practice) and Vairagya (Remembering the self) are two wings of the same bird."

                                                             -Nischala joy Devi


Abhyasa and Vairagya are two of my favorite Yoga Sutras. When used together they have allowed me to make great progress in the unity of my body, mind and spirit.  

Abhaysa is translated as dedicated practice. In his book "Outliers" Malcolm Gladwell talks about needing 10,000 hours to become an expert at something. It takes time, energy and effort to make change in your life, or to learn something new. This isn't a new concept to anyone, in fact it has been taught to us throughout our lives. 

Vairagya is often translated as non-attachment to the outcome of the dedicated practice. I love non-attachment, and it is not because I'm a monk who lives in the woods without any possessions. I love it because it gives me the permission to be like a reed in the wind, going wherever I need to go, as the wind pushes me. 

I believe that this dedicated practice and non attachment to it's outcome is a powerful theory for people with IC/PBS. Our lives are a roller coaster, but maybe more like a psychedelic roller coaster that goes sideways, upside down and maybe even into another dimension. 

Each of us has experienced our own roller coaster. You have a new treatment, supplement or diet that you are going to try. You feel a flicker of hope...a light at the end of the tunnel, you feel energized, you see yourself having your old life back, in your minds eye your future rolls out ahead of you all rosy and perfect. Then before you know it, the treatment does nothing-or even worse, gives you new symptoms you can't get rid of. The crash following this is intense and debilitating. It is hard on you and the people who care about you.  It is like a void that is swallowing you whole. You cannot escape the feeling of despair and grief. 

Or perhaps you have been in remission and managing your symptoms really well, and whammo! Huge flare that you cannot wrap your head around how it started or what the cause was. 

There isn't a book for your body where you can look up what is causing you pain and discomfort, only that you know you are suffering and that you will have to deal with it in one way or another.

I don't know about you, but for me that roller coaster ride ain't fun, and I want off it. So that's where dedicated practice and non attachment come in. Yes I am going to spend energy trying to get better, and it needs to be consistent. The key is to not count your chickens before they hatch. I'm not saying don't have hope. But how does cautiously optimistic sounds rather than blind hope?

I also love applying this principle to my daily activities. I am the queen of efficiency and expectations. I get shit done people! Well with chronic illness that energetic state of being is a fantasy. I used to be incredibly angry all the time because I didn't get my list done, or I couldn't go to an event. Now I have no expectations about what my day should look like. Hey if I get things done, that's a bonus. I move through life way slower and I delegate tasks as much as possible. I put energy into my life with as much consistency as possible, and then I just watch what happens. 

How this relates to my yoga practice is that I don't live in the future with it. I don't have this vision of myself doing handstands or being like a pretzel. Progression is not a goal of mine, I don't need to be more than I am right now. I am just experiencing my life, as it is, right in the moment.  Isn't that the ultimate mindfulness? 

So what would that dedicated practice without attachment to it's outcome look like in your life? 


 

 

 

 

Ahimsa and Negative thoughts

Ahimsa: The principles of non-violence toward all living things

Nischala Joy Devi describes Ahimsa as: Embracing reverence and love for all, we experience oneness

Having chronic illness is very difficult, it is hard to not blame yourself, or to have constant negative thoughts running through your brains. With a condition like IC/PBS it becomes even harder. We have this illusion that if we could only eat the right way, manage our stress exactly right and control all the variables we could solve the IC/PBS puzzle. Unfortunately it is not that simple or easy. The truth is that we are not in control, and how we speak to ourselves when things don't go as planned has a deep effect. If we can learn to change the way we speak to ourselves, we have the opportunity to wind down our stress response instead of ramping it up.

Have you every said the following to yourself?

  • I am so stupid, I know I can't eat ________ now I need to deal with this flare for the next 24 hours!
  • Why can't I just be strong enough to get through this?
  • Why can't I just remember to take my vitamins/medications on time?
  • I know I should rest, but this activity _______ really needs to get done.
  • Why can I not figure out what I am doing wrong? I should be able to fix this already!

This is something I experience often.I am sure we all have our own narrative in our minds along these lines. When we talk to ourselves in this manner does it speak of self compassion? of love for yourself? It sure doesn't to me, or the people in my life. 

I learned a great analogy and method of this from my psychologist.

Step 1: Imagine someone in your life that you take care of or that you feel love for. A child, a parent, friend, or pet. For me it is my dog Sophie; she represents the innocent, pure love that we should all have for ourselves. She also just does whatever she needs to take care of herself. Tired? she naps. Hungry? She eats. Wants a walk? she lets us know. 

Step 2: Now imagine your loved one is sick or injured. What would you do to take their pain away? Would you say that your love for them is boundless-that your love for them motivates you to expend energy and attention in ways you never thought possible?

Step 3: Now this is the exciting part: Apply that same love and compassion that you feel for your loved ones and flip it towards yourself. What does that look like? How does that idea make you feel?

This practice takes time! It has taken me years to get better at this, and I still fail all the time. Breaking habits is a challenge, but growth from change is a form of self care. 

This self love and compassion is the basis of deep healing that we are all capable of. Each time one of those negative self talk runs through your head, turn it around into something compassionate towards yourself. Lets turn the above statements into something based in ahimsa.

  • I am so stupid, I know I can't eat ________ now I need to deal with this flare for the next 24 hours!  I made a poor choice and ate something I shouldn't have. That's ok; I'm not perfect. I am going to do some self care to ease my pain and take care of myself. 

 

  • Why can't I just be strong enough to get through this? I am strong enough to deal with this, but right now I need rest so I can continue fighting tomorrow. 

 

  • I know I should rest, but this activity _______ really needs to get done. I know this activity _____ needs to get done, but right now the best care for me is rest. Whatever it is can wait, or I can ask someone to help me. Asking for help is also a form of self love and self care. 

 

  • Why can I not figure out what I am doing wrong? I should be able to fix this already! I have a condition, it is not my fault, I am doing to best I can to manage. 

 

  • Why can't I just remember to take my vitamins/medications on time? I am having trouble remembering my medications and vitamins. I am only human, sometimes I make mistakes. I am going to see if I can change my routine to something easier. IE medication alarm on my phone, or a pill box set for the week. 

One of the sweet things that happens when you start treating yourself with limitless love is that it greatly reduces the stress response. We all know that stress makes our pain worse; we see it daily. This approach brings less fighting and negativity, and more compassion, love and peace into our lives. Our thoughts are something that we are able to be in control of. Negative self talk is something that we have learned throughout our lives and it is something that we are capable of stopping. When I have these thoughts, I ask myself "is this true?" or "is this helpful?" or "would I speak to a friend this way?" I hope that these small and simple changes can impact your daily life as they have mine. 

 

 Sophie Dog. We are DINKS and she is like our child. She's got us wrapped right around her little paw. She is a rescue and we estimate around 12 years old. We've had her for 6 years.

Sophie Dog. We are DINKS and she is like our child. She's got us wrapped right around her little paw. She is a rescue and we estimate around 12 years old. We've had her for 6 years.

My Interstitial Cystitis Tips and Tricks

Interstitial Cystitis can be a frustrating condition to live with...what an understatement! At times you feel like no matter what you do, you cannot manage your symptoms. I have felt like I spent my entire life searching and trying to find a cure, or anything that makes the pain better. I am now in a place where I am managing my symptoms really well, and I am not searching anymore. It is so wonderful to be able to mostly just live my life!

What made this better for me is understanding my IC sub type and how to tailor treatments for my exact symptoms. The following information on subtypes is from the IC-Network.com

  1. IC: Hunner’s lesions – This small subset of patients (10% of the patient population) have inflammatory lesions visible on their bladder wall. In much of the world, only patients with Hunner’s lesions are diagnosed with “interstitial cystitis.” Patients without lesions are diagnosed with “bladder pain syndrome.” Hunner’s lesions require local lesion directed therapy (laser, fulguration, steroid injections) and do not generally respond to oral medications and bladder instillations. A new medical device currently under study, LiRIS (aka LiNKA) is the first treatment in history that has healed and/or reduced the size of lesions in just a two week treatment period.
  2. BPS: Bladder Wall Phenotype – Patient symptoms often start with a UTI, chemotherapy, chemical exposure or other bladder insult (i.e. drinking excessive amounts of soda, coffee, etc.). Frequency and urgency can occur throughout the day and night. Estrogen atrophy can also influence bladder wall function and sensitivity. Pain increases as the bladder fills with urine and is reduced on emptying. These patients usually find that their pain decreases when an anesthetic (lidocaine) is instilled into the bladder. Treatment priority focuses on calming and soothing the bladder wall, diet modification, OTC supplements, oral medications and other bladder directed therapies.
  3. BPS: Myofascial Pain Phenotype – These patients often have a history of sports, orthopedic injuries or childbirth trauma. Upon examination, they have pelvic floor tension and the presence of trigger points in their pelvis, abdomen, back and hips that trigger severe symptoms when touched. They may have less diet sensitivity, normal or larger voids, may sleep more comfortably when their muscles are relaxed. Bladder instillation of lidocaine is NOT generally helpful. Treatment priority is pelvic floor physical therapy.
  4. BPS: Neuralgia Phenotype – These patients can have pelvic floor muscle tension or other causes of pudendal nerve compression. This causes severe burning or electric pain when sitting, “sensory abnormalities in the pudendal distribution” and a positive Tinel’s sign (tingling or pins and needles when the nerve is tapped gently). Pain is not typically linked to bladder function. Treatment starts with identifying causes of injury/irritation, physical therapy and stretching for tight muscles and analgesics specific for neuropathic pain. Nerve blocks can be both diagnostic and therapeutic when conservative measures fail. Surgical nerve release is infrequently needed but can be effective in carefully selected patients.
  5. Multiple Pain Disorders/ Central Sensitization – These patients have multiple pain disorders (i.e. IBS, vulvodynia, fibromyalgia, etc.). Dr. Payne wrote “Their prognosis is inherently different and the invasive treatments that may be appropriate for pelvic pain phenotypes could actually make things worse…Clinicians should proceed much more cautiously.” These patients often demonstrate other signs of neurosensitization including extremely sensitive skin, diet sensitivity, drug sensitivity, chemical sensitivity and even visual sensitivity. Most also have an extremely sensitive sense of smell. Treatment priorities focus on treating all pain generators to reduce the overall volume of pain in the nervous system, as well as avoiding therapies that can be traumatic and/or irritate nerves. Patients are also encouraged to try cognitive behavioral therapies so that they can learn to control stress and other potential flare triggers. The goal is to maximize the patient’s ability to function in normal activities. Much current research is directed toward this phenotype including the NIDDK MAPP program.

I am of a subtype number 6, with pelvic floor dysfunction, central sensitization, fibromyalgia, Ankylosing spondylitis (A type of inflammatory arthritis in the spine and large joints in the body) and migraines. With this informationguiding what types of treatments will most likely be effective, I have been able to stop a lot of things that were just not working for me and focus on things that do help me. I don't bother with many things that target the bladder wall, I don't have issues there. You could say that I don't have IC, but rather Painful Bladder Syndrome. 

Here is a list of common everyday things that I do to manage my IC: 

  • Elimination diet focusing on bladder AND bowel health. There is a nerve that is shared between the bowel and the bladder. I find that if I am having IBS type symptoms my bladder is going to be hurting as well. I have also done a bit of a FODMAP diet as well
  • Squatty Potty. Learning how to have a bowel movement without straining has made such an enormous difference in my Pelvic floor dysfunction symptoms (PFD) You don't need to buy a squatty potty, you could use any stool. Their HILARIOUS and informative ad is here
  • Keeping Stool loose. I use just a bit of peglyte everyday to keep my bowels moving. I tend to get constipated. It makes painful gas, and then I need to strain to have a bowel movement, not a great combination! You may try other things to keep from being constipated, I tried many many things and this is by far the easiest most effective way for me.
  • I do take anti-depressants to help manage my anxiety. I had NO idea how anxious I was until I found a medication that worked for me. It was the third type of anti-depressant that I tried. These medications are not easy, but it has honestly changed my life. Anxiety is linked with PFD. If your body is constantly in a fight, flight or freeze mode, your pelvic floor muscles are going to be engaged. (more on this in another post)
  • Natural supplement for adrenal gland support. I know that "Adrenal gland fatigue" is not supported in western science, but this supplement REALLY helps me. I had testing done by the naturopath too see where I needed support in the day. 
  • Hydroxyzine: this is a prescription strength anti-histamine. If I have eaten something Im allergic too, I take this. It also has a bonus of making me sleep. It's a win win! I do not take this daily, but some people do. 
  • Drinking lots of water
  • Having healthy bladder habits (avoiding urinating just in case, or holding too long etc)
  • Regular sleep patterns
  • Exercise everyday (even just a dog walk counts!)

Spiritual and emotional side:

  • I gave up my religion. You might think..whoa! what does that have to do with your bladder health? Since I have such severe PFD, and it is so closely related to my emotional state, I needed to do whatever I could to ease my anxiety and emotional state. This meant that I discovered whole new philosophies that align more naturally with how I view the world. I am SO incredibly happy and at peace with this change in my life. (again another post necessary about what I do believe in now... hint: YOGA)
  • I went to see the psychologist. Understanding our thought patterns and what drives us helps to break up negative thoughts and processes. I highly recommend CBT (Cognitive Behavioral Therapy) it dramatically increased my quality of life.
  • I took a chronic pain management course, where I learned about the pain system, management techniques and about the emotional toll of chronic pain. My psychologist actually has a webinar that is essentially the same course here: https://www.pipain.com
  • I took up yoga and am continuing to learn about the 8 limbed path. It brought such healing to my life that I decided to become a teacher and share it with as many people as possible. 

This is just a list of what I find effective for me, at this time. I tried many other things that were not effective, but with this condition it is a trial and error process. I will probably make more blog posts going into details about my spiritual and emotional changes, as they are detailed subjects that I don't have time for here. 

I highly recommend The Better Bladder Book By Wendy Cohan and of course The IC-Network is an amazing resource.  

 

 

Why Yoga for Pelvic Pain?

Yoga is an amazing system of healing for the body mind and spirit, it has been around for thousands of years. While some of it's practices can seem esoteric and weird, or like only fit people can do it; it is really a system for every body. If you can breath, you can do yoga! The following will give you a brief idea of the outline of what yoga is.

Yoga is able to address the body mind and spirit  through the Pancha Maya Kosha model and the 8 limbed path. 

So what is the Pancha Maya Kosha model you ask? The Kosha's are the energetic layers of our body mind and spirit. There are 5 of them:

  • Anamaya Kosha this is our physical layer. We will use Asana to help our tissues relax and engage in a healthy way
  • Pranamaya Kosha this is the energetic layer accessed by our breath. We will use Pranayama to help our nervous system. 
  • Manomaya Kosha the intellect and mind layer. We will use mantras and meditation to calm our minds.
  • Vijnanamaya Kosha the wisdom body. Learning about pelvic health and the pain system in the body will bring us wisdom and knowledge.
  • Anandamaya Kosha the bliss body. Connecting to our spirit and bringing balance to our soul. 

Each of the koshas influence the other from the gross Anamaya (body) to the finite Anandamaya (spirit). This model will inform our practice and guide us in what you need to heal and bring balance. 

The 8 limbed path is a guide to our yogic path:

  • Asana The physical practice of Yoga
  • Yama How we treat others
  • Niyama How we treat ourselves
  • Pranayama Breath practices
  • Pratyahara Inner focus
  • Dharana Concentration
  • Dhyana Meditation
  • Samadhi Inner Bliss

Weaving the Pancha Maya Kosha model and the 8 limbed path together brings healing to our whole selves.